Culture and HIV/AIDS

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Title of project

Memory Work in Families Affected by HIV/AIDS

Organisation

Sinomlando Research Centre for Oral History and Memory Work in Africa, University of KwaZulu-Natal

Country/region

South Africa, KwaZulu-Natal

Project focus

The purpose of the programme is to enhance resilience in vulnerable children and orphans affected by HIV/AIDS through the methodology of oral history and memory boxes. The programme aims to:

• create, revise and test various manuals outlining the methodology of the memory boxes in English and in Zulu;
• train the staff and volunteers of various community organisations dealing with orphans and vulnerable children affected by HIV/AIDS in the methodology of memory boxes as a way of enhancing resilience in these children;
• assist the staff and volunteers of these organisations in doing memory work during family visits;
• assist these organisations in facilitating children’s groups during which the children receive emotional support and life skills through the methodology of the memory boxes.

Background

‘Sinomlando’ is Zulu for "we have a history". The Sinomlando Centre for Oral History and Memory Work in Africa started at the School of Religion and Theology, University of KwaZulu-Natal in 1994 to add indigenous oral history to the records of the history of Christianity and missionary work in Southern Africa, usually written from a Western perspective.

In 2000 the Centre set up The Memory Box Programme, inspired by a similar project created in 1997 in Uganda by NACWOLA, an association of women living with HIV/AIDS (who adapted the memory work of the British social worker Carol Lindsay-Smith), and the Humuliza Project, an AIDS orphans support programme in Tanzania. Originally the aim was to work with 20 families affected by HIV/AIDS living in the Durban area. The project found that many children were being raised by mothers whose husbands had deserted them. As family members died, it became clear that there was a pressing need to use the methodology specifically in support of AIDS orphans.

The purpose of the programme established in 2002 is to enhance resilience in vulnerable children and orphans affected by HIV/AIDS through the methodology of memory boxes. With the assistance of the programme’s “memory facilitators”, family members in communities affected by AIDS are encouraged to tell their life stories. In the context of HIV/AIDS, ‘resilience’ is defined as the ability of children to develop to their full potential, to learn to cope with absence and understand the value of their family history. The memories of the families are kept in a “memory box” which contains the story of the deceased parents as well as various personal objects and memorabilia.

Level of cultural intervention used in the project

Culture as Context: Sinomlando works to dismantle the cultural barriers which impede the psychosocial interventions that can help children cope with the changes in their lives arising from HIV/AIDS. The Zulu culture is not child friendly when it comes to discussing matters related to sexuality, sickness and death. Traditionally, children will not be told the truth about the death of their parents or the nature of the sickness at home. Even speaking to adults without being spoken to first is a sign of disrespect (ukuhlonipha).

However Zulu culture is shifting all the time, with urbanisation, migration and the fragmentation of the family. The project is therefore operating in an environment where traditional beliefs and practices are constantly evolving.

Culture as Expression: Storytelling and ritual are at the heart of Zulu culture. Traditional rituals to help children absorb their parent’s death include rolling them over the grave, and whispering to them when they are asleep, but not confronting them with the fact of death. The Memory Box project also values storytelling, but the stories are told when the child is awake, and the memory box itself is a family story as well as a grave of memories.

Culture as Content: The memory boxes are effectively libraries of Zulu life-stories.

Activities

The Memory Box Programme conducts three types of intervention: family visits, children’s camps and school partnerships.

In the first case, the programme’s “memory facilitators” encourage the sick parents or the caregivers to tell the history of the family in the presence of their children as a way of facilitating the bereavement process of these children. The methodology of oral history is used for collecting the family’s memories. Transcripts of conversations in Zulu are edited and compiled in a booklet that accompanies an audiotape of all the voices. These materials are presented to the interviewed family and placed in a “memory box” created by the children with the help of memory facilitators.

To complement the work done with the families, the memory facilitators organise children’s camps with the assistance of their partner organisations. Ten to twelve children of similar ages, usually orphans, attend nine sessions, each of two hours, after school, during the weekends or during the holidays. Basic play therapy techniques are used. Special emphasis is laid on life stories, family trees and bereavement narratives. During the sessions the children create memory boxes which they fill with various artefacts.

A similar intervention takes place in schools, usually in the context of the Life Orientation course. In some areas, up to half of the children are orphans. Many teachers want to provide emotional support to the learners but they lack the necessary skills. The Memory Box Programme provides them with training and supervision.

Sinomlando trains volunteers and community workers of partner organisations in the area of psychosocial support. The training is divided into stages. The first stage after making a partnership is to train as many participants of the partner organisation in what we call an Awareness Workshop which takes one day. The second step is to train a maximum of 20 volunteers or community workers of the partner organisation in what is called a Four Day Training Workshop plus One. This is an intensive uninterrupted training followed by an evaluation workshop. The second step is to help introduce those 20 members selected by the partner organisation in order to give them a deeper exposure of the psychosocial support for orphaned and vulnerable children. After three months an evaluation is conducted in order to measure whether or not the trainees are implementing the methodology and to what extend.

The Four Day Training Workshop is followed by a mentoring programme where Sinomlando staff called Memory Facilitators accompanies the two or three trainees to visit families selected by the partner organisation. During the visit parents or caregivers will tell the family story to the children. The story is recorded on tape or by hand and a booklet will be made which will be the first to go into the memory box of the children.

Since it is not easy in a traditional Zulu home for children to ask questions freely, the children will go in a Children’s Camp where an opportunity is afforded them to speak about their loss and understand why they are orphaned. The trainees will participate in a children’s camp and learn how it is conducted in order that they are able to conduct subsequent camps by themselves, without Sinomlando’s memory facilitators.

Outcomes

Some 10 community workers a year have been trained on a course to develop capacity in memory work since 2004 as “memory facilitators”. In addition, there is a rolling programme of short courses for community and NGO workers.

Since 2002 the Memory Box Programme has trained more than 60 NGOs, FBOs and CBOs in the methodology of the memory boxes, mostly in KwaZulu-Natal. More than 20 community organisations have signed partnership agreements with the Sinomlando Project.

The Sinomlando Centre has developed 2 training manuals: One for the training of memory facilitators and another one for the facilitation of children’s camps. In addition there has been a flow of journal articles and chapters, and the publication of Never too Small to Remember: Memory Work and Resilience in Times of AIDS (2005, Cluster Publications, Pietermaritzburg), which can be purchased online at www.clusterpublications.co.za.

There are no published figures for the total number of children who have been assisted by the project.

Feedback

There are three main sources of feedback: first from memory workers who have undergone the Sinomlando training, second from partner organisations, and third from the children and their families.

A study of the impact of the training programme was commissioned from the Sinikethemba AIDS support group and undertaken by Veronica Wilson. All the interviewees showed a good understanding of the methodology of memory boxes and indicated that they had started to implement the memory project in their families.

The continued growth in partner organisations is an indicator of the strength of the programme. There is also a geographical growth in the programme; requests for training and workshop facilitation have begun to come from countries outside South Africa – the first external workshop has been undertaken in the Central African Republic.

Feedback from families and children has been largely anecdotal, and has been recorded by partner organisations and memory facilitators. A number of case studies have been posted on the Sinomlando website.

Evaluation

In October 2007 the results of a two-year long study on the effectiveness of the Sinomlando Memory Box Programme and another psycho-social intervention, the Structured Group Therapy Programme, were presented at a summer school organised in Durban by the Mellon Foundation, which had funded this research. This has yet to be published.

Where time and funds allowed, organisations have had three evaluation workshops where the implementation of the methodology was evaluated through the completion of evaluation forms in a group of trained community workers and then one on one interviews with those who have more to tell. There has not been a specific evaluation of the cultural approach.

Future Plans

The project is continuous. As the aim of the project is to assist those children who have lost family members or carers, the project’s lifespan is indefinite as the number of orphans is increasing daily.

Partners

Sinosizo Home Based Care, Sinikethemba AIDS Support Group, Hope Worldwide and other NGOS, CBOs and schools.

Donors

National donors include the national and regional Departments of Arts and Culture, the national Research Foundation, Anglo-American Chairman’s Fund and the Nelson Mandela Children’s Fund

International donors include several faith based European NGOs, the Andrew M Mellon Foundation US, the Ministry of Development Cooperation Belgium, Child Emergency Relief International (CERI) and PEPFAR.

Start Date

2002 to present

Sources

Ms Nokhaya Makinawe (Sinomlando Centre)

Contact

Prof. Philippe Denis (Director)
Sinomlando Centre
University of KwaZulu-Natal
Private Bag X01, Scottsville, 3209, RSA

+27 33 260 5861

www.sinomlando.org.za

This work is licensed under a Creative Commons Licence.